Welcome

I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Sunday, July 19, 2009

Doctors Who Apologize

As illustrated in my last couple posts, autoimmune patients can be treated pretty poorly by medical professionals. The next couple articles show how a sincere apology from a doctor can actually heal both the doctor and the patient. As a patient who has been unfairly judged, I would like to think those doctors who have hurt me in the past realized what they did was wrong but just couldn’t bring themselves to apologize. Whether it was because of fear of admitting wrong and being sued or just plain pride, I’ll never know.


The Healing Power Of Apologies

“For moral reasons, physicians should be held to the same standards as others; that is apologies should be offered for “offenses,” not for predictable and expected mistakes.”


A Doctor's Apology Can Heal

"For me, the biggest piece of this conversation was her offering me forgiveness, you know … And it still sends a chill down my spine. Forgiveness goes both ways. It helps both sides."

“Nine years ago, no one ever blamed my mother's doctor for her death from a disease that ravaged her nonsmoker's lungs. But the memory of his apology and his earnest attempt to learn from what had happened still comforts me. There are times when "sorry" is the only thing to say. And sometimes, a doctor's apology helps everyone to heal.”


A Doctor's Apology, An Intensely Moving Experience

“The idea of a doctor apologizing to a patient was unheard of as few as 5 years ago. I first came upon the concept shortly after my misdiagnosis was resolved, through a piece run by CBS news. I promptly printed it off and mailed it to the doctors involved in my misdiagnosis. Then in 2007, CBS aired still another piece that talks about the physician's relief once the apology is made.”


Saying sorry is good for your health

“Physicians in particular may find it hard to apologize. Dr. Leape says this has to do with the culture of medicine. ‘First, our training leaves us with emotional baggage,” he says. “Physicians are selected for and socialized to expect perfect performance. A serious failure, such as an error that results in a major injury or death, can be so devastating to a doctor’s self-image that it may be overwhelming.’”

“In addition, he says, ‘Most physicians receive no training or support in offering apologies. They don’t know how to do it; they may feel ashamed and worry about being sued. So, it’s not a big surprise that apologies don’t always happen or are offered in the wrong way.’”

Sunday, July 5, 2009

Doctors Feel Threatened By Invisible Illnesses

While this article deals with Fibromyalgia, it will ring true with anyone who is suffering from an autoimmune disease. Almost everyone with an autoimmune disease has had at least one rude encounter with a doctor, friend, or loved one questioning their pain.

Some Doctors, Friends, Relatives Dismiss Sickness

"I know in my case I just had the idea if you got sick you went to a doctor and they treated you," Matallana said. "I never, ever imagined someone would question my pain and my inability to function. That was to me almost as bad as enduring the physical symptoms.”

“The transformation of dynamic people into suffering wrecks, without any apparent cause, prompts confusion and questioning. Fibromyalgia patients say even friends, relatives and spouses find it hard to accept the reality of what has been called an invisible illness.”

“Dr. Patrick Wood, an assistant professor of medicine at Louisiana State University, decided to specialize in fibromyalgia … I don't think it makes me popular with my colleagues, but we're trained to be little gods and anything that challenges our god-like capacity we dismiss," Wood said. "(A doctor) could say, 'There's nothing to objectively demonstrate you're really sick. How do I know you're sick?' You have to trust the patient's report, which we're often not willing to do when it comes to pain."

“Some doctors dismiss patients with vague complaints of pain as hypochondriacs or malingerers, lazy people looking for an excuse not to work. It doesn't help matters that he and other doctors regularly encounter true malingerers, about whom they must make judgments to determine government disability payments.”

"Every doctor is faced with being a useful idiot, being a tool for somebody who wants to get out of work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled me once and then I could say, 'Shame on you,' rather than try to prevent my ego from ever being bruised by assuming everyone whoever asked me for a pill for their pain is a drug-seeker. We can't lose our humanity just because we're afraid of being hoodwinked."